Posted at the request of Dr. Peter Rowe - study recruitment

Sent on behalf of Dr. Rowe, for patients close enough to travel to/from Baltimore

“We are actively recruiting patients with Chronic Fatigue Syndrome who might be interested in participating in a study we have been conducting. We are in our final 2 months of the study.

The study examines ways in which the nervous system might get sensitized in those with CFS, and involves a single visit to the Johns Hopkins Bayview campus for a half day, along with a follow-up phone call about symptoms the next day. Participants complete several questionnaires about baseline symptoms (about 45 min), have measurements of range of motion of the limbs, pain threshold measurements, as well as a Holter monitor [clarification from Denise – the Holter monitor is used only during the on-site portion of the study] to look at heart rate variability.

Individuals are then randomized to a neuromuscular strain for 15 minutes (we hold their leg elevated at a point where they feel stretch but not pain) or a more modest leg strain. People can remain on their usual medications, but we want them to skip short-acting morning medications like midodrine, atenolol, stimulants, etc., on the day of the test. We are mainly looking for those with CFS between the ages of 18-50 years, with at least moderate symptoms consistent with CFS (no “cured” CFS patients). People with both CFS and fibromyalgia are eligible, but they have to meet the CFS criteria. The study procedures have been well tolerated. Participants are not likely to gain anything individually from participating, but we do compensate them $100 for their time.

Anyone who is interested or would like to find out more can e-mail Malini Moni, the study research assistant. Her e-mail is mmoni2@jhmi.edu.

Peter C. Rowe, MD”

TAKE PART IN A RESEARCH STUDY ON CHRONIC FATIGUE SYNDROME

We are recruiting individuals to participate in a research study to learn if there are any differences in the way people withchronic fatigue syndrome respond to a particular type of physical examination.

WHO: Individuals, age 16-50, with chronic fatigue syndrome

WHAT: A single 2-hour study visit and a follow-up phone call on the day after the study visit. You will complete some questionnaires and brief physical exams while having your blood pressure and heart rate measured.

WHERE: The Johns Hopkins Bayview Medical Center

BENEFIT/RISK: There are no direct medical benefits or significant risks for participating in this study.

Sent on behalf of Dr. Rowe, for patients close enough to travel to/from Baltimore

“We are actively recruiting patients with Chronic Fatigue Syndrome who might be interested in participating in a study we have been conducting. We are in our final 2 months of the study.

The study examines ways in which the nervous system might get sensitized in those with CFS, and involves a single visit to the Johns Hopkins Bayview campus for a half day, along with a follow-up phone call about symptoms the next day. Participants complete several questionnaires about baseline symptoms (about 45 min), have measurements of range of motion of the limbs, pain threshold measurements, as well as a Holter monitor [clarification from Denise – the Holter monitor is used only during the on-site portion of the study] to look at heart rate variability.

Individuals are then randomized to a neuromuscular strain for 15 minutes (we hold their leg elevated at a point where they feel stretch but not pain) or a more modest leg strain. People can remain on their usual medications, but we want them to skip short-acting morning medications like midodrine, atenolol, stimulants, etc., on the day of the test. We are mainly looking for those with CFS between the ages of 18-50 years, with at least moderate symptoms consistent with CFS (no “cured” CFS patients). People with both CFS and fibromyalgia are eligible, but they have to meet the CFS criteria. The study procedures have been well tolerated. Participants are not likely to gain anything individually from participating, but we do compensate them $100 for their time.

Anyone who is interested or would like to find out more can e-mail Malini Moni, the study research assistant. Her e-mail is mmoni2@jhmi.edu.

Peter C. Rowe, MD”

TAKE PART IN A RESEARCH STUDY ON CHRONIC FATIGUE SYNDROME

We are recruiting individuals to participate in a research study to learn if there are any differences in the way people withchronic fatigue syndrome respond to a particular type of physical examination.

WHO: Individuals, age 16-50, with chronic fatigue syndrome

WHAT: A single 2-hour study visit and a follow-up phone call on the day after the study visit. You will complete some questionnaires and brief physical exams while having your blood pressure and heart rate measured.

WHERE: The Johns Hopkins Bayview Medical Center

BENEFIT/RISK: There are no direct medical benefits or significant risks for participating in this study.

Sent on behalf of Dr. Rowe, for patients close enough to travel to/from Baltimore

“We are actively recruiting patients with Chronic Fatigue Syndrome who might be interested in participating in a study we have been conducting. We are in our final 2 months of the study.

The study examines ways in which the nervous system might get sensitized in those with CFS, and involves a single visit to the Johns Hopkins Bayview campus for a half day, along with a follow-up phone call about symptoms the next day. Participants complete several questionnaires about baseline symptoms (about 45 min), have measurements of range of motion of the limbs, pain threshold measurements, as well as a Holter monitor [clarification from Denise – the Holter monitor is used only during the on-site portion of the study] to look at heart rate variability.
Individuals are then randomized to a neuromuscular strain for 15 minutes (we hold their leg elevated at a point where they feel stretch but not pain) or a more modest leg strain. People can remain on their usual medications, but we want them to skip short-acting morning medications like midodrine, atenolol, stimulants, etc., on the day of the test. We are mainly looking for those with CFS between the ages of 18-50 years, with at least moderate symptoms consistent with CFS (no “cured” CFS patients). People with both CFS and fibromyalgia are eligible, but they have to meet the CFS criteria. The study procedures have been well tolerated. Participants are not likely to gain anything individually from participating, but we do compensate them $100 for their time.

Anyone who is interested or would like to find out more can e-mail Malini Moni, the study research assistant. Her e-mail is mmoni2@jhmi.edu.

Peter C. Rowe, MD”

TAKE PART IN A RESEARCH STUDY ON CHRONIC FATIGUE SYNDROME

We are recruiting individuals to participate in a research study to learn if there are any differences in the way people withchronic fatigue syndrome respond to a particular type of physical examination.

WHO: Individuals, age 16-50, with chronic fatigue syndrome

WHAT: A single 2-hour study visit and a follow-up phone call on the day after the study visit. You will complete some questionnaires and brief physical exams while having your blood pressure and heart rate measured.

WHERE: The Johns Hopkins Bayview Medical Center

BENEFIT/RISK: There are no direct medical benefits or significant risks for participating in this study.

While I am all for more science, I'm not at all sure why such limited testing is going to be of use. Secondly, asking to skip medications is a big no-no, patients taking stimulants etc that would confound the trial should be excluded altogether. Short term stopping of such drugs will almost certainly confound results.

While I am all for more science, I'm not at all sure why such limited testing is going to be of use. Secondly, asking to skip medications is a big no-no, patients taking stimulants etc that would confound the trial should be excluded altogether. Short term stopping of such drugs will almost certainly confound results.

Click to expand...

If only patients who werent on meds were able to go into the trials, it would mean only the least sickest would be studied. Less sick may mean far less or even no abnormal results. The sicker the patients are going into the trials, the better.

Im in a trial at the moment and to be in have to miss my meds for at least a week before the study week (and during the study week too). Its been very tough on me to do this (Im far more exhausted, POTS far worst, far more discomfort etc) but I think its important for some of us to be making sacrifices to make sure there are sicker patients going into the studies esp when ME/CFS is currently being mixed and the results of CFS studies are being put onto ME patients.

I wasn't suggesting eliminating all meds, but rather meds that are likely to confound results. In those cases, stopping the meds for a day or two is likely to have other consequences and the withdrawal will confound the results anyway.

Sent on behalf of Dr. Rowe, for patients close enough to travel to/from Baltimore

“We are actively recruiting patients with Chronic Fatigue Syndrome who might be interested in participating in a study we have been conducting. We are in our final 2 months of the study.

The study examines ways in which the nervous system might get sensitized in those with CFS, and involves a single visit to the Johns Hopkins Bayview campus for a half day, along with a follow-up phone call about symptoms the next day. Participants complete several questionnaires about baseline symptoms (about 45 min), have measurements of range of motion of the limbs, pain threshold measurements, as well as a Holter monitor [clarification from Denise – the Holter monitor is used only during the on-site portion of the study] to look at heart rate variability.

Individuals are then randomized to a neuromuscular strain for 15 minutes (we hold their leg elevated at a point where they feel stretch but not pain) or a more modest leg strain. People can remain on their usual medications, but we want them to skip short-acting morning medications like midodrine, atenolol, stimulants, etc., on the day of the test. We are mainly looking for those with CFS between the ages of 18-50 years, with at least moderate symptoms consistent with CFS (no “cured” CFS patients). People with both CFS and fibromyalgia are eligible, but they have to meet the CFS criteria. The study procedures have been well tolerated. Participants are not likely to gain anything individually from participating, but we do compensate them $100 for their time.

Anyone who is interested or would like to find out more can e-mail Malini Moni, the study research assistant. Her e-mail is mmoni2@jhmi.edu.

Peter C. Rowe, MD”

TAKE PART IN A RESEARCH STUDY ON CHRONIC FATIGUE SYNDROME

We are recruiting individuals to participate in a research study to learn if there are any differences in the way people withchronic fatigue syndrome respond to a particular type of physical examination.

WHO: Individuals, age 16-50, with chronic fatigue syndrome

WHAT: A single 2-hour study visit and a follow-up phone call on the day after the study visit. You will complete some questionnaires and brief physical exams while having your blood pressure and heart rate measured.

WHERE: The Johns Hopkins Bayview Medical Center

BENEFIT/RISK: There are no direct medical benefits or significant risks for participating in this study.

Hope this helps clarify --- the study Dr. Rowe is conducting is NOT an exercise test.The study does require being off of certain meds for the morning of the study. That can certainly be a problem for some patients. I would venture to guess though that most patients have inadvertently missed one dose of meds at some point or another even in the most organized household.

As part of patient examinations, one thing that is part of every patient exam he conducts is a straight leg test. The patient does not do the lifting – the leg is lifted for them and in this study their leg is held for them for the duration. This is not a test involving exercise – it is a test of neuromuscular strain. From the experience of some people I know who have taken part in the test, there are negative cognitive ramifications of this.

The question of why there is only a one-day follow-up --- it has to do with money. There isn't enough money for more follow-up than that. I do know that input provided by study participants in days after the follow-up call has been much appreciated and is taken into account.

"Would it not be far better to wait until there is funding for second day testing?
Or if completely restriced - to test on the second day rather than the first?"

Given that this is not a CPET test or an exercise test of any sort I am not unclear why you feel two days of a straight leg test would be necessary. This study is not intending to induce Post-exertional collapse.